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Eye Health Organizations Database Alphabetical List

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(The) Achromatopsia Network
P.O. Box 214
Berkeley, CA 94701-0214
• Provides information about achromatopsia and about the resources that are available to meet the special needs of those affected by this disorder that is characterized by severe color vision defect and poor visual acuity. Seeks to promote awareness and education about achromatopsia. Assists patients and family members in networking. Publishes a newsletter and other publications.

Agency for Healthcare Research and Quality (AHRQ)
U.S. Department of Health and Human Services
540 Gaither Road
Rockville, MD 20850
(301) 427-1364
1-800-358-9295 (AHRQ Clearinghouse)
• Promotes effective, appropriate, high-quality health care; increased access to care; and improves the way health services are organized, delivered, and financed. Provides Now You Have a Diagnosis: What's Next, a publication designed to assist patients in their decision-making. (Also available in Spanish).

AMD Alliance International
1929 Bayview Avenue
Toronto, Ontario
(647) 348-9277
• Works to raise the awareness about age-related macular degeneration (AMD) and an understanding of available options for treatment, rehabilitation, and support services. Publishes an educational brochure in five languages.

American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120-7424
1-877-887-6327 (Public Service Program)
(415) 561-8500
• Represents ophthalmologists in the United States. Offers public information materials and clinical education programs in a variety of formats. Offers a Find a Eye M.D. service on their website to help people locate local ophthalmologists.

American Academy of Optometry
6110 Executive Boulevard, Suite 506
Rockville, MD 20852
(301) 984-1441
• Seeks to maintain and enhance excellence in optometric practice. Fosters research and the dissemination of knowledge in both basic and applied vision science.

American Association for Pediatric Ophthalmology and Strabismus
655 Beach Street
San Francisco, CA 94109
(415) 561-8505
• Dedicated to ensuring quality medical and surgical eye care of children and adults with strabismus. Provides information on common eye problems including strabismus, amblyopia, retinopathy of prematurity, conjunctivitis, and learning disabilities. Offers a website tool to help people find pediatric ophthalmologists in their local areas.

American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121
Silver Spring, MD 20910-3803
(301) 495-4403
(301) 495-4402--TTY
• Encourages independent living for individuals who are deaf-blind. Provides technical assistance to persons who are deaf-blind, families, educators, and service providers.

American Autoimmune Related Diseases Association, Inc.

22100 Gratiot Avenue
Eastpointe, MI 48021
(586) 776-3900
1-800-598-4668 (Literature Requests)
• Dedicated to bringing a national focus to autoimmune diseases, conditions caused by the body attacking itself. Provides information on eye-related diseases include Behcet's disease, Graves' disease, multiple sclerosis, myasthenia gravis, sarcoidosis, Sjogren's syndrome, temporal arteritis (giant cell arteritis), and uveitis.

American Behcet's Disease Association
P.O. Box 80576
Rochester, MI 48308
631-656-0537 (Administrative Office)
• Provides support and information to individuals with Behcet's disease, symptoms of which include ocular inflammation (uveitis). Publishes a quarterly newsletter and distributes patients pamphlets. Coordinates a pen pal/phone pal network. Provides physician referrals. Coordinates a network of local support groups. Holds an annual international conference.

American Board of Ophthalmology
111 Presidential Boulevard, Suite 241
Bala Cynwyd, PA 19004-1075
• The American Board of Ophthalmology (ABO) is an independent, nonprofit organization responsible for certifying ophthalmologists (eye physicians and surgeons) in the United States. The ABO offers physician certification information and verification of certification to the public free-of-charge by phone.

American College of Medical Genetics (ACMG)
7220 Wisconsin Avenue, Suite 300
Bethesda, MD 20814
• Represents the medical genetics profession dedicated to making genetic services available to and improve the health of the public. Promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases. Offers a “Find a Geneticist” service.

American Council of the Blind
2200 Wilson Boulevard, Suite 650
Arlington, VA 22201
(202) 467-5081
• Serves as a national clearinghouse on blindness issues for individuals, organizations, and institutions. Provides an information and referral service on blindness services, Federal legislation, administrative action, and rulemaking on national and state levels. Educates the public about blindness and the abilities of visually impaired people. Publishes the Braille Forum, a free monthly national magazine.

American Diabetes Association
ATTN: Center for Information
1701 North Beauregard Street
Alexandria, VA 22311
(800) 342-2383
• American Diabetes Association Hours of operation are Monday - Friday, 8:30 AM-8 PM Eastern Standard Time. The American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. Contact ADA for diabetes-related questions or to request a diabetes information packet. Spanish language consumer website.

American Foundation for the Blind
2 Penn Plaza, Suite 1102
New York, NY 10121
(212) 502-7600
• Serves as a one-stop information and referral resource for people who are blind or visually impaired, the people who work with them, and the general public. Conducts a wide variety of programs to support independent living, literacy, employment, and access to technology. Publishes professional materials for blindness and low vision. Offers consultation services to eye care, rehabilitation, and education professionals. Provides referrals to low vision centers. Advocates for legislative change.

American Optometric Association
243 N. Lindbergh Boulevard
St. Louis, MO 63141
• Represents optometrists in the United States. Optometrists are trained to examine, diagnose, treat and manage disorders that affect the eye or vision. Provides brochures on eye problems for the lay public and professional materials on eye care delivery. Offers a Find a Doctor service on their website to help people locate optometrists. Coordinates InfantSEE, a public health program designed to ensure early detection of eye conditions in babies 6 months to 1 year. Member optometrists provide a free comprehensive infant eye assessment to children younger than one year. A service of the AOA in partnership with The Vision Care Institute of Johnson & Johnson Vision Care. Locate a AOA participant on the InfantSEE website or by phone at (888) 396-3937.

American Printing House for the Blind
1839 Frankfort Avenue
P.O. Box 6085
Louisville, KY 40206-0085
(502) 895-2405
• Promotes the independence of blind and visually impaired persons by providing specialized materials, products, and services needed for education and life. Products include Braille and large-print textbooks, Braille teaching tools, and talking books. Provides free subscriptions to Reader's Digest and Newsweek on disposable audiocassettes. Provides Reader's Digest in Braille.

American Society of Ocularists
P.O. Box 608
Earlysville, VA 22936-0608
(434) 973-4066
• American Society of Ocularists is an international, non-profit, professional and educational organization founded by professionals specializing in the fabricating and fitting of custom-made ocular prosthetics (artificial eyes). Offers referrals to local ocularists, information on eye prosthesis care, surgical procedures, and FAQ's about eye prosthesis.

American Society of Ophthalmic Plastic and Reconstructive Surgery (ASOPRS)
5841 Cedar Lake Road, Suite 204
Minneapolis, MN 55416
(952) 646-2038
• Founded in 1969 to establish a qualified body of surgeons who have training and experience in this highly specialized field. The purpose of ASOPRS is to advance education, research, and the quality of clinical practice in the fields of aesthetic, plastic and reconstructive surgery specializing in the face, orbits, eyelids, and lacrimal system.

American Uveitis Society
700 18th Street South
Suite 601
Birmingham, AL 35233
• Increases knowledge regarding uveitis in the medical and research professions through instructional courses, clinics, lectures, and seminars, at which members and guest speakers present subjects of current interest and importance. Promotes and disseminates knowledge of the treatment of uveitis to the public. Encourages and develops uveitis investigation and research. Provides online search for uveitis specialists.

Aniridia Foundation International (AFI)
502 W. Regis Place
Cordova, TN 38018
(901) 409-1600
• The Aniridia Foundation International is a 501(c)3 non-profit organization dedicated to assisting those with low vision or blindness due to aniridia, a genetic syndrome. Support services, educational and social programs, and medical conferences help educate people with aniridia, their families, teachers, employers, and the medical community. AFI has created the International Medical Registry and Gene Bank which will provide researchers with data and benefits in better health care, treatments, advances in research for those with aniridia and others who live with conditions which make up the aniridia syndrome such as glaucoma, corneal scarring, diabetes and autism spectrum disorders. Membership is free.

Associated Services for the Blind
919 Walnut Street
Philadelphia, PA 19107
(215) 627-0600
• Offers personal adjustment to blindness training and orientation and mobility training. Provides materials in Braille. Offers computer training using adaptive devices.

Association for Education and Rehabilitation of the Blind and Visually Impaired
1703 N. Beauregard Street, Suite 440
Alexandria, VA 22311
(703) 671-4500
• Includes educators, rehabilitators, administrators, orientation and mobility specialists, low vision therapists, parents, and houseparents of blind children; agencies, schools, and others interested in the education, guidance, vocational rehabilitation, or occupational placement of the blind and partially-sighted. Cooperates with colleges and universities in conferences and workshops. Presents awards, conducts certification programs, and maintains job exchange services. Works with state, provencial, and national governments on legislation affecting services to blind and visually impaired individuals.

Association for Macular Diseases
210 E. 64th Street, 8th Floor
New York, NY 10065
(212) 605-3719
• Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.

Association for Retinopathy of Prematurity and Related Diseases (ROPARD)
P.O. Box 250425
Franklin, MI 48025
• Dedicated to eliminating the problems of low vision and blindness in children caused by premature birth and retinal disease, by funding clinical research to understand, treat, and prevent retinopathy of prematurity (ROP) and related retinal diseases. Funds innovative work on the development of new low vision devices, teaching techniques and services for children who are visually impaired and their families.

Benign Essential Blepharospasm Research Foundation
go to the topP.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
• Distributes informational materials on benign essential blepharospasm. Provides a support system for persons who suffer from the disease. Publishes a bimonthly newsletter. Coordinates a video lending library.

Blinded Veterans Association
477 H Street, NW
Washington, DC 20001-2694
(202) 371-8880
• Links veterans with services, rehabilitation training and other benefits, and helps them find jobs. Offers spouses and dependent children of blinded veterans a chance to continue their education through the Kathern F. Gruber Scholarship Program.

Braille Circulating Library, Inc.
2700 Stuart Avenue
Richmond, VA 23220
(804) 359-3743
• Loans Braille materials, talking books, audiocassettes, and large print Christian materials.

BrightFocus Foundation
22512 Gateway Center Drive
Clarksburg, MD 20871
• BrightFocus Foundation is a nonprofit organization supporting research and providing public education to help eradicate brain and eye diseases, including Alzheimer's disease, macular degeneration, and glaucoma. BrightFocus provides free educational materials to people affected by or interested in these diseases, empowering them to take action for themselves and others. Through a toll-free phone number, 1-800-437-2423, people can speak directly with a member of the information services staff, Monday through Friday from 9am to 5pm Eastern time, for answers to questions, support, and referrals.

Centers for Disease Control and Prevention (CDC)
go to the topU.S. Department of Health and Human Services
1600 Clifton Road, NE MS D-25
Atlanta, GA 30333
1-800-311-3435 (Office of Communications)
(404) 639-3534
• Promotes health and quality of life by preventing and controlling disease, injury, and disability. Provides information on diseases including AIDS/HIV, cytomegalovirus, onchocerciasis (river blindness), schistosomiasis, toxocariasis, and toxoplasmosis.

Children's Glaucoma Foundation (CGF)
2 Longfellow Place, Suite 201
Boston, MA 02114
(617) 227-3011
• Serves to increase the awareness of the symptoms and encourage parents and doctors to screen infants and children for glaucoma.

Choice Magazine Listening
85 Channel Drive
Port Washington, NY 11050
(516) 883-8280
• A free audio magazine anthology that offers the best of contemporary and unabridged magazine articles, stories, poems and interviews chosen by experienced editors and read by professional voices. Available to eligible persons in 4-track cassette and digital cartridge versions for play on the Library of Congress Talking Book Machines or as a DAISY digital download from

Christian Record Services for the Blind
4444 South 52nd Street
Lincoln, NE 68516
(402) 488-0981
• Provides a lending library of books in Braille, large print materials, and cassette tapes. Provides referrals to local low vision specialists and support groups.

Coat's Disease Information for Parents
• Seeks to educate and inform, to increase awareness of Coats' disease, via a website. Provides links to other sites and resources for parents and families.

Columbia Lighthouse for the Blind
1825 K Street, NW
Suite 1103
Washington, DC 20006
• Is dedicated to helping the blind or visually impaired population of the greater Washington region overcome the challenges of vision loss.

Cornea Research Foundation of America
9002 N. Meridian Street, Suite 212
Indianapolis, IN 46260
(317) 844-5610
• The Cornea Research Foundation of America was founded with a mission to restore and preserve vision through clinical research and educational programs relating to disorders and diseases of the eye. Supports research devoted to corneal transplants, intraocular lens complications, refractive surgery, and other specialized procedures.

Council of Citizens with Low Vision International
2200 Wilson Blvd., Suite 650
Arlington, VA 22201
• Serves as an advocacy group for the visually impaired. Provides information on low vision technology. Offers scholarship. Publishes the CCLV News.

Eye Bank Association of America
go to the top1015 Eighteenth Street NW, Suite 1010
Washington, DC 20036
(202) 775-4999
• Establishes medical standards for evaluating and distributing eyes for corneal transplantation and research. Certifies eye banks and technicians. Awards annual grants used for research and transplantation.

EyeCare America
P.O.Box 429098
San Francisco, CA 94142-0998
• EyeCare America provides comprehensive eye exams and care for up to one year, often at no out-of-pocket cost. To find out if you are eligible, visit their online referral center at EyeCare America is a public service foundation of the American Academy of Ophthalmology (AAO).

Federal Trade Commission (FTC)
go to the topConsumer Response Center
600 Pennsylvania Avenue, NW
Washington, DC 20580
(202) 326-2222
• Enforces federal antitrust and consumer protection laws. Works to eliminate acts or practices that are unfair or deceptive. Publishes factsheets on making informed decisions about LASIK surgery.

Food and Drug Administration (FDA)
10903 New Hampshire Avenue
Silver Spring, MD 20993-0002
• Oversees the safety of food, cosmetics, medicines, medical devices, and radiation-emitting products. Provides information on contact lenses, intraocular lenses, refractive surgery, and corneal implants for myopia.

Foundation Fighting Blindness
7168 Columbia Gateway Drive, Suite: 100
Columbia, MD 21046
1-800-683-5551 (TDD)
(410) 423-0600
(410) 872-0639 (TDD)
• The urgent mission of The Foundation Fighting Blindness is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. For a $25.00 annual membership fee, FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. The Foundation also , provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and Usher syndrome. Their newsletter, InFocus, and their e-newsletter, InFocus online. present articles on coping, research updates, and Foundation news. InFocus is published 3 times per year; InFocus online is sent approximately 3 times per year. Their national conference is usually held every year.

Friends of the Congressional Glaucoma Caucus Foundation (FCGCF)
1983 Marcus Avenue, Suite 111
Lake Success, NY 11042
1-877- 611-4232
(516) 327-2236
• Coordinates the Student Sight Savers Program, an effort where supervised medical school students conduct screenings for glaucoma and other eye diseases for high-risk groups. Offers grants to cover the free screening of glaucoma in many different regions.

(The) Glaucoma Foundation
go to the top80 Maiden Lane, Suite 700
New York, NY 10038
(212) 285-0080
• Coordinates public education activities and encourages routine eye examinations. Funds research on the molecular genetics of glaucoma and on optic nerve regeneration. Provides referral to glaucoma specialists. Publishes public and patient education materials, including a newsletter, Eye to Eye.

Glaucoma Research Foundation
251 Post Street, Suite 600
San Francisco, CA 94108
(415) 986-3162
• Founded in 1978, The Glaucoma Research Foundation (GRF)is America's oldest and most experienced national institution dedicated solely to its mission: to prevent vision loss from glaucoma by investing in innovative research, education, and support with the ultimate goal of finding a cure. Glaucoma Research Foundation offers education and support for people and their families through Gleams, a free newsletter providing information about glaucoma treatment and research updates. Gleams is available in print and by e-mail. Additional publications include: Understanding And Living With Glaucoma, a 32 page booklet written by and for people with glaucoma. Childhood Glaucoma, a 32 page reference guide for parents of children with glaucoma.

Graves' Disease & Thyroid Foundation
P.O. Box 2793
Rancho Santa Fe, CA 92067
• To provide current medical information and referral and resource information to people with Graves' disease, a leading cause of overactive thyroid. Publishes a periodic newsletter. Coordinates public and professional education on Graves' disease.

Guide Dogs for the Blind
P.O. Box 151200
San Rafael, CA 94915-1200
• Provides Guide Dogs and training in their use to visually impaired people throughout the United States and Canada. Services are free.

(The) Guthy-Jackson Charitable Foundation
8910 University Center Lane, Suite 725
San Diego, CA 92122
• The Guthy-Jackson Charitable Foundation is dedicated to funding research in the search to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disease. Our Foundation is passionate in its support of providing opportunities to develop programs for prevention, clinical treatments, and an eventual cure for this rare and often misdiagnosed disease. We are committed to providing an online community called “Spectrum” for everyone affected by NMO. Our websites contain extensive information and resources for NMO. If you would like to donate to the cause of NMO, The Guthy-Jackson Charitable Foundation will dedicate 100% of all funding gifts to NMO basic science research centers.

(The) Hadley School for the Blind
go to the top700 Elm Street
Winnetka, IL 60093
(847) 446-8111
• Promotes independence in blind and visually impaired people through distance education. Serves students in all 50 states and 100 countries. Program areas include Adult Continuing Education (ACE), High School (HS), Family Education (FE), and Professional Education. Course materials are delivered in Braille, large-print, audio, and online formats. Courses are free of charge in the ACE, HS, and FE program areas. A modest tuition is charged in the Hadley School for Professional Studies.

Helen Keller National Center for Deaf-Blind Youths & Adults (HKNC)
141 Middle Neck Road
Sands Point, NY 11050
(516) 944-8900
• Offers intensive and comprehensive rehabilitation training to individuals who are deaf-blind. Provides evaluation and training in communication skills, adaptive technology, orientation and mobility, independent living, work experience, and other support services.

Independent Living Services for Older Individuals Who Are Blind
go to the topU.S. Department of Education, OSERS
400 Maryland Avenue, SW
Washington, DC 20202-2800
1-800-437-0833 (TTY)
• Provides training in skills of routine daily living, travel, communication, provision of adaptive devices, low vision services, family and peer counseling, and community integration such as outreach and information and referral. Funded through Title VII, Chapter 2 of the Rehabilitation Act. Programs are available in every state and accessible through each state agency for the blind.

Institute for Families
4650 Sunset Blvd.
Mail Stop 111
Los Angeles, CA 90027
(323) 361-4649
• Offers support and information to families of children with visual impairment. Provides direct counseling support to families at no cost after a diagnosis is made. Offers a nationwide telephone counseling service. Publishes Retinoblastoma Support News and Parent to Parent as well as the books My Fake Eye, the Story of My Prosthesis and My New Glasses: A Book for Parents and Children. Videos are available.

International Children's Anophthalmia Network (ican)
5501 Old York Road
Genetics, Levy 2 West
Philadelphia, PA 19141
• Provides information on anophthalmia and microphthalmia. Coordinates a patient registry. Offers referrals to local resources. Coordinates gatherings for individuals with anophthalmia/microphthalmia and their families. Publishes a newsletter, The Conformer.

International Eye Foundation
10801 Connecticut Avenue
Kensington , MD 20895
• IEF is proud to have played a part in the reduction of the leading public health causes of blindness and has, in the last decade, worked harder to combat childhood blindness and the new threats highlighted by the World Health Organization in its December 16, 2004-released data on visual impairment. With your support we can continue to bring hope to the people of the world's developing nations.

International Foundation for Optic Nerve Disease (IFOND)
P.O. Box 777
Cornwall, NY 12518
(845) 534-7250
• Promotes research into the causes, prevention, and treatment of optic nerve disease. Disseminates information about optic nerve disease.

JBI International (est. as The Jewish Braille Institute)
go to the top110 E. 30th Street
New York, NY 10016
(212) 889-2525
• Provides a circulating library of Talking Books, Braille and Large Print and a public education program. Offers some counseling and referrals to low vision care in the U.S.

(The) Jewish Guild Healthcare
15 West 65th Street
New York, NY 10023
(212) 769-6200
• Provides free audio library services to individuals with visual impairments by mail (1600 titles, primarily best sellers) and a national radio reading service broadcasting 7 days, 24 hours.

Learning Ally
go to the top20 Roszel Road
Princeton, NJ 08540
• Provides free cassette tapes, textbooks for students, and materials needed for occupational pursuits.

Lighthouse International
111 E. 59th Street
New York, NY 10022
(212) 821-9200
• Lighthouse International is dedicated to fighting vision loss through prevention, treatment and empowerment. Founded in 1905, and located in New York City, the Lighthouse furthers this mission through its synergy of services, research, education and advocacy. Direct services include: Low Vision Center, Vision Rehabilitation Therapy, Child Development Center, Music School, Career and Academic Services, Assistive Technology Center and The Lighthouse Store.

Lions Clubs International
300 W. 22nd Street
Oak Brook, IL 60523-8842
(630) 571-5466
• Provides financial assistance for eye care to individuals through local clubs. Coordinates sight conservation activities. (Note: There are Lions Clubs in most localities, and services vary from club to club. Check your telephone book for the address and telephone number of your local club.)

Macula Vision Research Foundation (MVRF)
go to the topOne Tower Bridge
100 Front Street, Suite 300
West Conshohocken, PA 19428-2894
(610) 668-6705
• The Foundation’s mission is to find the cause, prevention, treatment and cure for macula vision diseases with the goal of saving sight and providing public education, advocacy and support to those with macular degeneration. Coordinates SupportSight, a service to enhance the quality of life people with macular degeneration through public education programs, small support groups, and a toll-free hotline. Awards the Macula Vision Research Grant to vision scientists and conducts scientific conferences and seminars.

Macular Degeneration Foundation, Inc.
P.O. Box 531313
Henderson, NV 89053
702-450-2908 (International calls)
• The Macular Degeneration Foundation provides a website ( as an informational tool for patients, universities, insurance companies etc. They also provide a toll-free number that patients may call for mail-out packets or for quick questions. The Foundation has a quarterly newsletter (Magnifier) electronically as well as a mail-out edition for those without internet access. They have a resource consultant available to help patients identify agencies, organizations, or services in specific areas. They are a connection to macular degeneration support groups Nationally and Internationally.

Macular Degeneration Partnership
6222 Wilshire Blvd., Suite 260
Los Angeles, CA 90048
(310) 623-4466
• Provides accurate and timely information to patients and family members about AMD, research, experimental treatments, and clinical trials. Provides connections to a variety of resources for low vision and support. Publishes a monthly online newsletter and offers a free e-mail subscription to AMD Update.

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 997-4488
• Develops and distributes health care materials for health professionals and the public on genetic and congenital diseases and disorders and on premature birth. Offers public and professional health education and community service programs to improve maternal and newborn health. Works with other organizations to initiate and implement community programs for prenatal care education and service. Awards basic and clinical research grants to scientists interested in genetic and congenital disorders and premature birth.

7500 Security Boulevard
Baltimore, MD 21244-1850
• A federal social insurance program under the Department of Health and Human Services (HHS), Medicare provides healthcare coverage for people over 65 and people under 65 with permanent disabilities. Most Americans are entitled to basic coverage under Medicare if they or their spouse have contributed payroll taxes for more than 10 years.

National Alliance for Eye and Vision Research (NAEVR)
go to the top Alliance for Eye and Vision Research (AEVR)
1801 Rockville Pike, Suite 400
Rockville, MD 20852-1606
(240) 221-2905
• A coalition of organizations that includes ophthalmic and optometric professionals, consumer advocates and industry which is dedicated to educating Congress and the public about the economic and societal value of federally funded eye and vision research.

National Association for Parents of Children with Visual Impairments
P.O. Box 317
Watertown, MA 02471
(617) 972-7441
• Offers emotional support for parents of blind or visually impaired children. Provides information, training and assistance, and help in understanding and using available resources. Publishes Awareness, a quarterly newsletter.

National Association for Pseudoxanthoma Elasticum
8760 Manchester Road
St. Louis, MO 63144-2724
(314) 962-0100
• Provides information on pseudoxanthoma elasticum (PXE), a systemic disease that causes the body to produce defective connective tissue, and in the eye may cause retinal disease. Publishes a newsletter.

National Cancer Institute (NCI)
National Institutes of Health
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322
(301) 435-3848
1-800-332-8615 (TTY)
• Conducts and supports research on cancer. Offers information for the general public and cancer patients and their families, including materials on ocular melanoma and retinoblastoma.

National Center for Complementary and Alternative Medicine (NCCAM)
National Institutes of Health
P.O. Box 7923
Gaithersburg, MD 20898
1-888-644-6226 (NCCAM Clearinghouse)
1-866-464-3615 (TTY)
• Supports research and evaluation of unconventional medical practices and disseminates this information to the public.

National Consortium on Deaf-Blindness (NCDB)
345 N. Monmouth Avenue
Monmouth, OR 97361
• The National Consortium on Deaf-Blindness (NCDB) works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training in the area of deaf-blindness. NCDB brings together the resources of three agencies with long histories of expertise in the field of deaf-blindness to identify the needs of children, their families and their education teams, to support, through information and technical assistance, the capacity of state and local agencies to meet those needs.

National Dissemination Center for Children with Disabilities
1825 Connecticut Avenue, NW, Suite 700
Washington, DC 20009
(202) 884-8200
• NICHCY is a national center that provides information to the nation on: disabilities in children and youth; programs and services for infants, children and youth with disabilities; the nation's special education law (IDEA); and research-based information on effective practices for children with disabilities. NICHCY focused on children and youth (birth to age 22). Anyone can use its services--families, educators, administrators, journalists, students.

National Eye Institute (NEI)
National Institutes of Health
31 Center Drive MSC 2510
Bethesda, MD 20892-2510
(301) 496-5248
• Conducts and supports research on eye diseases and vision disorders. Offers free publications for the general public and patients.

National Family Association for Deaf-Blind (NFADB)
141 Middle Neck Road
Sands Point, NY 11050
• Serves as the largest national network of families focusing on issues surrounding deaf blindness.

National Federation of the Blind
200 East Wells Street at Jernigan Place
Baltimore, MD 21230
(410) 659-9314
• With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people's lives through advocacy, education, research, technology, and program encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind. The NFB has affiliates in all fifty states plus Washington, D.C. and Puerto Rico, and over seven hundred local chapters.

National Heart Lung and Blood Institute (NHLBI)
National Institutes of Health
31 Center Drive MSC 2480
Bethesda, MD 20892-2480
(301) 592-8573
(240) 629-3255 (TTY)
• Conducts and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. Distributes information on sarcoidosis.

National Institute of Allergy and Infectious Diseases (NIAID)
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612
(301) 496-5717
• Supports research aimed at developing better ways to diagnose, treat and prevent infections, immune system diseases, and allergies.

National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
Building 31, Room 4C02
31 Center Drive MSC 2350
Bethesda, MD 20892-2350
(301) 496-8190
• Conducts and supports research on the many forms of arthritis and diseases of the musculoskeletal system (bones) and the skin. Distributes information on temporal arteritis (giant cell arteritis), Behcet's disease , and Sjogren's syndrome.

National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
P.O. Box 5801
Bethesda, MD 20824
(301) 496-5751
• Conducts and supports research on disorders of the brain and nervous system. Distributes information on topics including Behcet's disease, dyslexia, headache, multiple sclerosis, pseudotumor cerebri, septo-optic dysplasia, stroke, temporal arteritis (giant cell ateritis) and von Hippel-Lindau disease.

National Institute on Aging (NIA)
National Institutes of Health
31 Center Drive MSC 2292
Bethesda, MD 20892-2292
(301) 496-1752
• Promotes healthy aging by conducting and supporting research and public education. Distributes Aging and Your Eyes, part of the Age Page series.

National Institute on Deafness and Other Communication Disorders (NIDCD)
National Institutes of Health
31 Center Drive, MSC 2320
Bethesda, MD 20892-2320
Voice: (301) 496-7243
TTY: (301) 402-0252
Voice: (800) 241-1044
TTY: (800) 241- 1055
• NIDCD supports and conducts research and research training on the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language and provides health information, based upon scientific discovery, to the public. Distributes Usher Syndrome, and Usher Syndrome: New Insights Lead to Earlier Treatment.

National Keratoconus Foundation
6222 Wilshire Blvd, Suite 260
Los Angeles, CA 90048
(310) 623-4466
• Sponsors basic and clinical research as well as a public education program including self-help groups and seminars. Provides information to patients and eye care practitioners.

National Library of Medicine (NLM)
National Institutes of Health
U.S. Department of Health and Human Services
8600 Rockville Pike
Bethesda, MD 20894
(301) 594-5983
• Maintains the world's largest medical library collection and coordinates PubMed, a database of millions of references to articles published in medical journals. Provides free online searching of the medical literature through MEDLINEPlus and links to health information topics on the eyes and vision. Provides a drug information guide to more than 9,000 prescription and over-the-counter medications. Maintains a clinical trials database for patients, family members, and members of the public.

National Library Service for the Blind and Physically Handicapped
Library of Congress
Washington, DC 20542
(202) 707-5100
(202) 707-0744 (TDD)
• Provides free library service to individuals with visual impairments. Offers Braille and large print materials and recorded books and periodicals.

National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
(516) 883-8712
• Disseminates information about Marfan syndrome, a genetic disorder of the connective tissues in which dislocated lenses, early onset cataracts and retinal detachments are among the ocular symptoms common to Marfan patients. Provides a network of volunteer support contacts for patients and their family members. Supports and encourages various types of research. Publishes The Marfan Syndrome, a comprehensive booklet on the disease, and fact sheets on the Marfan eye.

National Organization for Albinism and Hypopigmentation
P.O. Box 959
East Hampstead, NH 03826-0959
(603) 887-2310
• NOAH provides information and support regarding albinism and related conditions, promotes public and professional education about these conditions, encourages research and funding that will lead to improved diagnosis and management of albinism, and povides networking for those with special interests related to albinism such as minority groups and Hermansky-Pudlak Syndrome. NOAH provides information and support for its members by sponsoring workshops and conferences on albinism; publishing a quarterly magazine, Albinism InSight; publishing information bulletins on topics specific to living with albinism; provides a network of local chapters and contact people; provides a web site that has information about albinism and bulletin boards where people can share experiences; spreads knowledge about albinism and works to improve attitudes towards those with the condition through television appearances, newspaper articles, information packets for libraries, and outreach to professionals; networks with support groups for people with albinism in other countries; and promotes development of albinism support groups throughout the world through participation in the Albinism World Alliance.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
(203) 744-0100
(203) 797-9590 (TDD)
• Acts as a clearinghouse for information about rare disorders. Fosters networks between families with similar disorders. Educates the general public and medical profession about the existence, diagnosis, and treatment of rare disorders.

National Organization of Parents of Blind Children (NOPBC)
200 East Well Street at Jernigan Place
Baltimore, MD 21230
• Works to provide information and support to parents of blind children and to develop and expand resources available to parents and their children. Publishes Future Reflections, a magazine for parents and educators of blind children. NOPBC is a division of the National Federation of the Blind (NFB).

National Society of Genetic Counselors (NSGC)
401 N. Michigan Avenue
Chicago, IL 60611
(312) 321-6834
• Represents the genetic counseling profession. Provides information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. Offers a “Find a Counselor” service.

New Eyes for the Needy
549 Millburn Avenue
P.O. Box 332
Short Hills, NJ 07078-0332
(973) 376-4903
• New Eyes for the Needy provides vouchers for the purchase of new prescription eyeglasses. Eligible clients can receive a voucher through a social service agency or a school nurse, or directly from our office. Clients can present a New Eyes voucher to any participating local optical dispenser, who fits the client with the proper prescription eyeglasses. The dispenser then receives reimbursement directly from New Eyes.

NIH Consensus Development Program
P.O.Box 2577
Kensington, MD 20891
• Distributes Clinical Use of Botulinum Toxin Consensus Development Conference Statement, November 12-14, 1990.

Ocular Melanoma Foundation (OFM)
go to the topP.O. Box 29261
Richmond,, VA 23242
• Works to increase awareness, enhance education and research, and provide advocacy among both patients and health care professionals regarding ocular melanoma.

Office of Rare Diseases, National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, MD 20892
(301) 402-4336
• Coordinates the Rare Disease Clinical Research Database (RDCRD). Offers information on more than 6,000 rare diseases, current research and clinical trials, and support groups.

520 8th Avenue, 11th Floor
New York, NY 10018
• ORBIS International is a nonprofit humanitarian organization that works in developing countries to save sight worldwide. ORBIS prevents and treats blindness through hands-on training, public health education, improved access to quality eye care, and partnering with local health care organizations in an effort to eliminate avoidable blindness. For more information on ORBIS, please visit

Prevent Blindness America
go to the top211 West Wacker Drive, Suite 1700
Chicago, IL 60606
• Prevent Blindness America fulfills its mission of the prevention of vision loss through focused attention on its core public health competencies of early detection, patient support, systems enhancement, public policy, research, public awareness, and health education. The organization's website - - serves as its comprehensive source of information on eye health and safety; and the Prevent Blindness America Vision Health Resource Center provides an avenue for the public to receive individualized attention through a toll-free phone number (800-331-2020) or by submitting questions via the website. Depending on the needs of the individual, Prevent Blindness America distributes educational information and fact sheets on a variety of vision and eye health-related concerns.

Prevention of Blindness Society of Metropolitan Washington (POB)
1775 Church Street, NW
Washington, DC 20036
(202) 234-1010
• Dedicated to the improvement and preservation of sight by providing services, education, advocacy and innovation. Screens children for vision loss and strabismus and adults for glaucoma. Provides thousands of low-income and homeless persons with eyeglasses. Sponsors the Aging Eye Network, the Macular Degeneration Network and Stargardt's Network that provide public programs and support groups, and offers the Low Vision Learning Center for low vision rehabilitation.
Pueblo, CO 81009
(719) 295-2675
• Offers free and low-cost Federal publications of consumer interest on topics including children, food and nutrition, health, money management, and travel/hobbies.

PXE International, Inc.
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
(202) 362-9599
• Initiates and supports research on pseudoxanthoma elasticum (PXE). Provides support and education in the form of publications, online discussion groups, a website, and conferences for affected individuals and their families. Provides peer consultation for health care providers. Coordinates offices world wide, the PXE International Blood and Tissue Bank, and the PXE Research Consortium.

Reader's Digest Partners for Sight Foundation
go to the top44 South Broadway - 17th Floor
White Plains, NY 10601
• Partners for Sight is dedicated to increasing the self-reliance and dignity of blind and visually impaired persons. Through our grant program, large print publishing business and the web-based low vision service, we are providing the tools and resources necessary for them to lead independent, productive lives. provides extensive self-help information on adapting everyday activities and locating helpful services and independent living resources -- for individuals with vision loss, their family members, and those who work with them. Offers a vast collection of free self-help information and materials to increase personal independence, options, and opportunities for those who are blind or have low vision.

Research to Prevent Blindness, Inc.
645 Madison Avenue
Floor 21
New York, NY 10022-1010
(212) 752-4333
• Provides research grants to scientists interested in eye disease and vision disorders. Conducts seminars to encourage communication among scientists, practicing ophthalmologists, and the public.

Resources for Rehabilitation
22 Bonad Road
Winchester, MA 01890
• Offers training programs for public and professionals on coping with low vision. Publishes books and materials related to low vision including Living with Low Vision: A Resource Guide for People with Sight Loss.

Retinoblastoma International
18030 Brookhurst Street, Box 408
Fountain Valley, CA 92708
• Supports research, education, clinical care, safer/more effective treatments, early diagnosis and awareness related to retinoblastoma. Provides online information to parents, family, and friends, as well as medical education and hands-on training in the management of retinoblastoma to health care professionals.

Seva Foundation
go to the top1786 Fifth Street
Berkeley, CA 94710
• Seva is an international health organization focused on eye care services for under-served communities around the world. Grassroots programs bring direct care, volunteer doctors, and carefully planned capacity building programs to the developing world. In partnership with local hospitals and organizations, Seva has helped restore eyesight to nearly 3 million people.

Sight for Students
1-800-852-7600, ext.3881
• Sight for Students is a Vision Service Plan (VSP) program that provides free vision exams and glasses to low-income, uninsured children. The program operates nationally through a network of community partners who identify children in need and VSP network doctors who provide the eyecare services. A Spanish website and program fliers are available through links on

Sjögren's Syndrome Foundation (SSF)
6707 Democracy Boulevard, Suite 325
Bethesda, MD 20817
(301) 530-4420
• Provides support and education for people with Sjögren's syndrome and information to the medical community through local chapters. Publishes Moisture Seekers (newsletter) and The Sjögren's Syndrome Handbook. Distributes information on the complications of Sjögren's syndrome including dry eye (keratoconjunctivitis sicca).

Stevens-Johnson Syndrome Foundation
P.O. Box 350333
Westminster, CO 80035-0333
(303) 635-1241
• Provides information and support for people with Stevens Johnson syndrome and toxic epidermal necrolysis, skin and eye problems associated with adverse drug reactions. Encourages public awareness of adverse reactions to drugs.

Stickler Involved People (SIP)
15 Angelina
Augusta, KS 67010
(316) 259-5194
• Provides information and support to people with Stickler syndrome, a connective tissue disorder that affects joints, the heart, eyes, and ears. Publishes a quarterly newsletter. SIP holds an annual conference.

Surgical Eye Expeditions
6950 Hollister Ave., Suite 250
Santa Barbara, CA 93117-2807
(805) 963-3303
• Surgical Eye Expeditions (SEE) International is a nonprofit, humanitarian organization that provides medical, surgical, and educational services by volunteer ophthalmic surgeons with the primary objective of restoring sight to disadvantaged blind individuals worldwide.

The Ocular Immunology and Uveitis Foundation
go to the topFive Cambridge Center, 8th Floor
Cambridge, MA 02142
617-494-1431 ext 112
• The Ocular Immunology and Uveitis Foundation is a 501c(3), not-for-profit, tax-exempt organization. Our mission is to find cures for ocular inflammatory diseases, to correct the worldwide deficit of properly trained ocular immunologists, and to provide education and emotional support for those patients afflicted with ocular inflammatory disease. In addition to research, our services include: six support group meetings at the Massachusetts Eye Research and Surgery Institution, online support for patients, children, and families, Pathfinders Program (patient to patient support), Ocular Inflammatory Disease educational guides and documentaries, Fellowship Training, Physician Education and Patient Conferences, and publications (textbooks, articles, monographs).

VHL Family Alliance
go to the top2001 Beacon Street, Suite 208
Boston, MA 02135-7787
• Provides current information on Von Hippel-Lindau syndrome, an inherited cancer that may cause tumors of the retina as well as other parts of the body. Coordinates an international network of family support groups. Publishes the VHL Family Forum (newsletter). Spanish Resources: Website

(The) Vision of Children Foundation
12671 High Bluff Drive, Suite 300
San Diego, CA 92130
(858) 799-0810
• Dedicated to curing childhood hereditary blindness, including ocular albinism and other related genetic vision disorders. Sponsors genetic research to gain scientific understanding and develop therapies and cures for these conditions. Provides information and support to families of blind and visually impaired children and to other organizations and service providers. Seeks to increase awareness among parents and medical practitioners of the warning signs of ocular diseases in newborns. Works to develop the first Patient Database Registry for ocular albinism and other genetic vision disorders.

243 N Lindbergh Boulevard
St. Louis, MO 63141
• Coordinated by the American Optometric Association (AOA). Provides free eye care to uninsured, low-income workers and their families.

P.O.Box 96
Mohegan Lake, NY 10547
(914) 528-5120
• Provides extensive self-help information on adapting everyday activities and locating helpful services and independent living resources -- for individuals with vision loss, their family members, and those who work with them. Offers a vast collection of free self-help information and materials to increase personal independence, options, and opportunities for those who are blind or have low vision.

VISIONS/Services for the Blind and Visually Impaired
500 Greenwich Street, 3rd Floor
New York, NY 10013-1354
(212) 625-1616
• Offers free services to adults over age 55 and teens with severe vision problems. Services include self-help study kits, counseling, vision rehabilitations training, consumer workshops, and an information center. Provides volunteer and overnight camp services for blind and visually impaired adults and elders and parents of blind children.

VisionServe Alliance
8760 Manchester Road
St. Louis, MO 63144
(314) 961-8235
• Represents, networks and advocates on behalf of nonprofits providing services to people who are blind or visually impaired and the people they serve. Serves as a unified resource in the field of vision rehabilitation for advocacy, public policy, education, ethical management, professional growth and quality services.
go to the
•, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by other parents, as well as links to meaningful resources and ways to connect with other families.

World Health Organization Blindness Prevention Programme
• WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends. In the 21st century, health is a shared responsibility, involving equitable access to essential care and collective defence against transnational threats. WHO Programme for the Prevention of Blindness. The WHO Programme for the Prevention of Blindness was created in 1978 following a resolution adopted by the World Health Assembly in 1975.

Xavier Society for the Blind
go to the top154 E. 23rd Street
New York, NY 10010-4595
(212) 473-7800
• Serves as the National Catholic Press and Lending Library for the visually impaired. Provides materials in Braille, large print, audio CD and audio downloadable.

Department of Health and Human Services NIH, the National Institutes of Health